Ethics Issues in Outbreak Containment in Low and Middle Income Countries: Developing Ethics Guidance and Practical Tools for Outbreak Response

 

PIs: Nancy Kass and Jeff Kahn
Funder: Wellcome Trust
Timeline: October 2015-September 2016

Photos: Top Row: CDC; Bottom Row: USAID  

collageWhat’s the Problem?

Infectious outbreaks are an unfortunate yet unavoidable reality in both high and low income countries.  While one line of response to these outbreaks will and must be the rapid development and testing of preventive and therapeutic interventions, there will always be a need for traditional public health response as well – surveillance, active case-finding, contact tracing, isolation, and sometimes quarantine.  This is especially true when treatments may not be available, but also, as we continue to witness with diseases ranging from syphilis to HIV—even after treatments are available.

Though the need for a traditional public health response of may not be contested, how to best implement these measures is often far from clear, especially in contexts of scarcity, recent or current civil conflict, and with an influx of international responders from around the world. Misunderstanding among the public of the meaning and purpose of public health measures, fear of the disease, and/or longstanding distrust of government or Western aid organizations may fuel counterproductive but understandable reactions on the part of the public. Yet, public health countermeasures rely in large part on public cooperation. Contact tracing is useless if affected individuals refuse to provide names of their contacts. Isolation is meaningless if individuals do not cooperate, and quarantine will not work if those affected are not provided with what they need in terms of food, water, and care for loved ones.  How can such measures be implemented fairly, respectfully, and effectively?  What can responders do to enhance the acceptability of public health containment measures and uphold commitments to ethics at the same time?

This project aims to understand the key reasons why public health measures sometime fail or met with resistance or distrust, and develop guidance that can enhance the fairness and respectfulness of outbreak containment in LMIC settings.

Research Question:

How can traditional public health containment measures be implemented during large-scale infectious disease outbreaks in LMICs in ethically optimal ways?

Project Activities:

  • Systematic review of existing literature reporting the challenges and lessons learned from previous outbreaks of Ebola and other infectious outbreaks in LMICs. This review summarizes previous experiences of implementing containment measures at the community level with the aim of understanding what is known about how the way containment measures are implemented influences the ways they are perceived, followed, and understood by local communities.  While there is a rapidly increasing literature on lessons learned during the 2014-2015 outbreak of Ebola, the review includes experiences from previous outbreaks of Ebola, Lassa fever, Marburg virus, polio, and smallpox. The review establishes a baseline from which to understand the challenges and strategies that other outbreak responses have encountered to understand how an ethics lens can contribute to more respectful, fair, and ultimately effective approaches to containment of infectious disease.
  • In-depth interviews with US based and international staff with experiencing responding to infectious outbreaks in LMICs.  These interviews will explore the ethics issues encountered by a variety of stakeholders involved in the response to Ebola in Sierra Leone and Liberia.  Through these open-ended interviews, the project will identify and explore the issues that first-hand responder found most ethically challenging or morally distressing.  The findings from these interviews will inform the development of ethics guidance by ensuring the guidance is relevant to emergency and outbreak response practitioners and responds to real-life concerns.
  • Focus groups with Ebola survivors, family members of those who died of Ebola, and health workers who responded to Ebola in Liberia and Sierra Leone.  The focus groups will bring additional real-world experience into the development of guidance by exploring the way the containment response was perceived and experienced by those closest to it.  Understanding what was confusing, scary, unclear, and inviting recommendations from those who experienced Ebola first-hand provides further insight that will inform the development of ethics guidance.
  • Normative analysis and policy development – The project will convene an Expert Working Group four times during the project year to engage in normative analysis and policy development work.  The working group will provide feedback and additional direction to the development of ethics guidance and practical tools such as checklists to improve the practice of public health containment.  The working group is comprised of 27 members from academia, international NGOs, government ministries, and development funders (see a list of working group members here).